Jimmy Kimmel – you took us on stage with you and we won’t leave you <3

billy2Dear Mr. Kimmel,

First, I’d like to wish Billy a continued smooth recovery and I’ll keep him in my prayers for his next leg of his CHD journey.

I’m the author of the enclosed book about a girl with a CHD and pacemaker. Other heart children have enjoyed having a character they can relate to, so I thought Billy might as well someday. My daughter, Riley, was born with a defect to her electrical system of her heart and has had a pacemaker since she was a baby and will need one for the rest of her life.

I wanted to personally thank you on behalf of heart parents everywhere for your emotional telling of Billy’s story. I wish you could’ve seen the emotional reaction you stirred among the heart community – from those who walked in your shoes 20 years ago to those who were sitting by their heart child’s bed that next morning.

We all cried. We cried as your words brought back the dark memories of our early days on our own journey. We cried as you thanked doctors and nurses, because we too have a list of doctors and nurses we are eternally grateful for. We cried as we each remembered the words, “There’s something wrong with your baby’s heart.”

But more than that, what I saw from all my heart friends from around the world was gratitude to you for elevating our cause onto literally another stage we couldn’t access. Many of us are strong advocates for CHD – whether it’s research funding, patient and family care, and CHD advocacy. Yet, it’s hard to get people to really listen to us. I’m the president of The Children’s Heart Foundation (PA) and have fundraised for CHD research for years, I’ve had meetings with congressman, I’ve spoken at schools with my book, yet after posting your video, I had someone comment, “Thank you for sharing his story, some of us don’t understand the cause but this personal story helps.” I’ve been sharing my story and countless friends’ stories for years, but it was your story that caught people’s attention. So thank you for telling all of our stories that night!

You are now part of a community. You are not alone. For all of Billy’s procedures and obstacles he may face, we will be there. When your story fades from your fans’ memories, it will be front and center in our minds. We will pray for Billy, and it will be fierce prayers. When you have a worry in the middle of the night that seems silly, we won’t think it’s silly. When your worry seems outlandish, we won’t think it’s crazy, because we have had that worry too.

We all stood with you on the stage that night and we’ll stand with you through the rest of Billy’s journey. Because that’s what we do in this community, because the CHD battle is for life.

Best wishes to you, Billy, and your family,

Lori M. Jones, heart mom to Riley and President of The Children’s Heart Foundation (PA)

Fallen soldier’s eerie final letters paint picture of Memorial Day meaning

 

Leroy

Recently, my mother handed me a scrapbook of letters my great-grandmother had received from her son – my great uncle, Leroy – while he served in the Army during WWII. As a writer, my mom thought they’d be great inspiration for my next novel. The letters were fascinating for many reasons, and I grew to know a relative I never had the privilege of meeting. I had head to toe goose bumps when I read how he had planned to be a writer after the war, wanting to buy a typewriter as soon as he got home. My grandfather (Leroy’s brother) had told me how the two of them had planned to start a band, but it was the first I’d heard about Leroy’s love of writing.

My great uncle was in the Army’s 4th Infantry Division and trained for years for one purpose: to storm the beaches of France, march through Europe and defeat the enemy. He’d told my great-grandmother about learning to use the bayonet, wade through swampy waist-high waters carrying supplies, and even meeting General Eisenhower. After missing Christmases and years with his family, D-Day grew closer but he couldn’t even tell them when he was to depart; it was all top secret.

Some of his letters were redacted, but he did manage to send my great-grandma a scrap of newspaper with the date and hid a message. He had scrawled, “My overseas physical is Friday. This is it, Mom. Don’t worry. Keep quiet.”

There were more letters once he reached England, and the last letter was dated May 30th (today!). He told her not to worry. His final words to her were, “It might be three or four years, but I’ll be home.” Leroy was among the first to hit the beaches of Normandy (code name, Utah Beach) under German fire.

My great-grandmother had a few letters that she wrote to him after D-day, but they are at the end of the scrapbook stamped “Return to Sender.” He was reported missing, and on August 8, 1944, two months after the invasion, he was officially reported as deceased. His final words to her came true when his body was returned to the U.S. “four years” later and laid to rest in Arlington National Cemetery.

We were always told he died during the first day of the invasion, but his tombstone says, June 7th. No one knows exactly what happened, but he never made it home alive. Never made it past his 22nd birthday. Never formed a band and never became a writer. Or did he? Because his letters are richer than any novel I’ve ever read or could ever write.

But one letter in particular hit me directly in the heart and filled me with immense pride and gratitude for a man I never met, but share his DNA.  It was a letter he sent on his final Christmas on this earth. He lists each family member and what he imagined they were doing Christmas day – Grandma in the kitchen, cousins laughing, and then he goes onto say,

“That’s why I joined the Army, to fight, mom, so that those things can go on in the future. So that Americans can speak freely, read a newspaper that isn’t censored, so that a Christian may worship in any way he chooses. These are the things we are fighting for, why I joined to fight, and by God, I am ready to die fighting for them if necessary…I’ll see you after the war. Don’t worry about me. I’ll be back as good as I left. I’ll be a better man.”leroyletter

So, I did find inspiration for another novel in his writings, but really, I found inspiration to live my life to the fullest, to be grateful and proud to be an American, to thank him and all our military every day for the abundance of freedoms we enjoy daily. And to my great-grandmother: the glaringly empty pages at the end of the scrapbook tell the tale of her sacrifice she made for our country, as well.

Leroy Erickson did not die in vain and he achieved a goal bigger than writing a book or starting a band – he helped to protect our American way of life. His division went down as one of the most successful from World War ll. Those who survived stormed through and liberated France, participated in the Battle of the Bulge, leading to the eventual defeat of Hitler.

Thank you, Uncle Leroy, for your service and your sacrifice and to all those who fell with you. To those who did not go on to achieve another personal goal, but achieved the greatest goal of all. Thank you.

leroygraveVisit Lori’s website: http://www.lorimjones.com

 

Behind the “juicy” scenes of LATE FOR FATE!

Every author has a story behind all their published books. While my other books have more deeply personal reasons I brought those stories to life, my newest release, LATE FOR FATE, was born out of pure fun and a past profession.

Many years ago, I moved to Washington, DC to start a new life (you’ll have to read Renaissance of the Heart for juicy clues as to how that turned out) and I began working in downtown DC, one block from the White House as a paralegal. I would travel every morning on the Metro from the suburbs and quickly became captivated with all the hustle, bustle and beauty of our nation’s glorious capital and perpetually entertained – and often frustrated – by their subway system.

I worked for talented well-known defense attorneys and worked for the Employment Law group at Paul Hastings for many years. When some of the attorneys would come across a “juicy” case, they’d say, “Oh, Lori will enjoy this one!” I never knew then, but some of my experiences, and some plaintiffs, would become inspiration for characters in LATE FOR FATE. We even represented Bill Clinton’s attorney (from the Paula Jones case) during his own employment lawsuit, and that was partially inspiring for some of this book’s characters and scenes (fully, completely fictionalized!). We would see lawsuits and situations and often joke, “You just can’t make this stuff up!”

Without fail, the Metro provided me with many tales to report once I arrived in the office. From a man rubbing his leg on me, to another man killing a wasp on my leg, to me once busting a dude pleasing himself in a metro station, I saw it all. Colleagues would joke, “You should write a book.” Well, fifteen years later, I would. And many of those lively colleagues inspired some characters in this book as well. Thank you to all of them for a wonderful career in law!

Fast-forward to 2011. I had finished writing my first novel, Renaissance of the Heart, and thought, “That’s it. I’ll never be able to write another book. All my creativity went into that book. I’m done. I’m finished.” Then I saw an ad for a new Mindful Writers’ group that was starting to meet ten minutes from my home. Writers would learn how to meditate to focus their creativity and then write side by side for four hours in a back room of an Eat n Park family restaurant. Well, it worked! I tapped into my DC days and began to write. I also took a flash fiction piece I had written the previous summer, called Too Late For Fate and expanded it. (I’ve written two additional novels in that group as well!)

I’ve always been fascinated by twists of fate, those seemingly innocuous decisions that can change the course of our lives. How we then often blame God and others for things that go awry, when we should ask, who is really responsible?

On a side note, this story was written during the Fifty Shades of Grey phenom and may have influenced some “spicy” scenes! But, hopefully, you will see that it was all done artfully and purposefully and necessary for the plot (or for entertainment, you decide!).

Thank you to everyone who made this possible: my Northern Pittsburgh Writers Critique Group, My Mindful Writers Group (Madhu!), and my other writing group (CGGs) who helped inspire some key scenes! And of course, to my husband (See acknowledgement section of Renaissance!) and my kids for tolerating all my artist moodiness. Enjoy this DC journey! You can order LATE FOR FATE HERE:

Order Kindle ebook here!

Order paperback here!

Visit Lori’s website! COVER LateforFate_w9871_750

The Christmas Eve I almost died – 10 years later.

Everything was shaping up for a perfect holiday. It was the day before Christmas Eve and we’d just brought our newborn daughter home, fresh out of the NICU, and her heart was stable. My parents were staying with us and my sister and her family would join us Christmas day.

But then it hit me –  the most horrific neck pain and headache I’d ever experienced in my life. (Well, up until that point anyway.) I thought it was a migraine. However, it would later be labeled as a “pre-bleed.”

Since I was on a lot of pain meds from my C-section, I functioned okay the next day and tried to enjoy Christmas Eve with my newly expanded family. We all watched the Steelers win and secure a spot in the playoffs. Life was good. That evening, Mark stayed with the girls while my parents and I went to Christmas Eve church services. I remember popping some Motrin because the headache started to return.

I went to bed when we got home as the pain intensified. I told Mark that something was wrong and I called my doctor. The doctor said, “Get to the hospital right now. I don’t want to scare you, but you could drop over and die – that’s how serious this is.”

So I woke my parents, taught them how to work my video camera in case we missed Christmas morning, and my husband drove over 100 miles per hour toward the hospital. But, the cops stopped us. They called an ambulance for me and we were then forced to go to the smaller hospital close by instead of Fairfax Hospital where my doctors waited.

I couldn’t even recall what year it was at this point and thankfully morphine began to kick in. After a scan, I remember how people started rushing around me and I knew something was wrong. My brain was hemorrhaging. The doctors told my husband that they were unsure what to do with me, because the other hospitals who treat brain trauma would not accept me because I was now – with the diagnosis – a liability. Most likely I would die.

No, the Steelers made the playoffs. I was not going to die yet! Luckily, Georgetown Hospital is a neuro teaching hospital and agreed to take me, so I rode in a helicopter – alongside Santa’s sleigh – into DC.

Although I missed Riley’s first Christmas and Sydney’s fourth, I was granted a miracle and the bleeding stopped without intervention. Typically a second bleed occurs and would have been deadly. So, they monitored me for a week in the ICU, administered large doses of morphine, and ran a gazillion tests. I was sent home and finally got to celebrate Christmas with my family (a week late). It took months to fully recover, while adjusting to a new baby and a 3 year old, and the ramifications of my autoimmune disease flaring up.

But I was alive!

Also, I’d been on Percocet for 6 weeks due to head pain, so the chances of getting addicted weighed on my mind. More than 4 days on Percocet is bad.

33 had always been my lucky number. I learned that with subarachnoid brain hemorrhages – 33.3% die, 33.3% are left impaired, and the other 33% recover fully.

I do not take this miracle for granted. I was given a decade with my children, my family, an unimpaired brain that allowed me to write four novels & lead a chapter of the Children’s Heart Foundation, an unimpaired body that allowed me to run in more than ten 5ks, and … I got to see the Steelers win the Super Bowl that year (and another in 2009)!

I learned that miracles are possible and God will either give you a miracle or walk beside you until it is your time to receive one. Tonight as I reflect on the miracle of Jesus’ birth, I reflect on the overwhelming gifts and miracles He’s given me.

Five days before the hemorrhage, right before they wheeled me into the OR for Riley’s birth, unsure of what her broken heart would do, my doctor looked at me and said, “She’s going to be my Christmas miracle.” Her low heart rate stabilized after birth and no intervention was needed for a year.

Who knew our family would be given two miracles in one week. Although these were two huge ones, I believe miracles and blessings surround us daily. We just need to open our eyes and look. You may not feel like you’re receiving a miracle right now, but He’s walking beside you, guiding you to your next blessing. Merry Christmas everyone!

Finding Hearts

I see hearts all the time ~ at just the right time. Heart-shaped clouds appear just as I’m about to cry or a heart-shaped leaf falls right in my path in the middle of a stressful day. I’ve seen cracks in cement formed into heart-shaped perfection right before my foot falls on top of it, making me smile. And, there’s the potato chip hearts I’ve plucked out of the bag right as I’m contemplating a decision.

I smile each time.

My oldest daughter thinks I search for them, so of course I find them. Since I’m involved with the Children’s Heart Foundation and hearts are always on my mind, then of course I see them!

But I think it’s something else.

When I see a heart, I choose to believe it’s God’s way of assuring me that I’m on the right path, or that He’s at least walking the path with me. I know many who have lost children and believe it’s their little angel sending them a message, letting them know they are present. I believe that too.

I do not believe God reaches down and pushes the dead clump of grass into a heart right before I walk by that spot on the sidewalk. But I do believe He guides me to look there – at just the right time. He lets me know He’s there, as a friend, if I need him. And since my mind is open to messages, I get them.

Maybe these little hearts are helping me make a decision by reminding me to choose the path that was born out of love. If I lead with my heart, any decision I make can’t be wrong. And, sometimes I think they’re gentle reminders to not be self-critical, but to love my life and trust every path I’ve chosen.

For a moment in time, I’m reminded that I’m not alone and I’m an important member of this universe, contributing to it and receiving gifts from it. I’m connected to the spiritual world even while in the human material world.

So, take a deep breath, open your mind, lead with your heart, and I guarantee, you’ll see a heart shape today ~ and you’ll smile! ❤ When you do, let me know!
new rock pic

The Moment I Quit Volunteering!

It’s not easy sharing your mini-nervous breakdowns with the world, revealing how you’re flawed, but I’ll do it anyway.

In my previous post, I shared how I was chairing an outdoor charity walk on Sunday with over 1,000 people expected, lots of vendors and volunteers and the hopes of making 100,000 dollars to battle congenital heart defects and benefit the Children’s Heart Foundation and the Adult Congenital Heart Association. Every piece of planning was set and, as feared, I woke up to rain.

The previous night, our tent vendor had a family emergency and couldn’t set the tents up the night before. So, some sleep was lost fearing he might get kidnapped by aliens and we’d have no tents or tables on top of bad weather.

I put on my brand new Walmart rain boots and headed out at 6 a.m., with a bubble of excitement inside of me, but a black cloud hovering over it.

Volunteers started to show and the tents went up. Coated in plastic, we all got to work, everyone telling my pouty face that all would be okay and the event would be terrific. A little voice inside of me kept saying – no one will show up and your hundreds of hours of planning will be for not.

I hate that little voice, he’s so mean.

Five different people said –“I don’t get it, I looked at the radar and it should be clear! I don’t know why it’s raining.”

God doesn’t look at radars, He’s got His own plan, I thought. I didn’t think this in a God’s-got-this-it-will-be-good way, but in a thanks-for-nothing-God way.

I hate my little negative voice, I can be so mean.

I’d lost faith. In that moment, I couldn’t see the big picture, I didn’t see that every other time in my life, things work out for the best. I was bitter.

Vendors showed up, but the annoying misty rain kept covering everything. The bouncy house couldn’t go up in rain and one of the mascots couldn’t get wet so she stayed home. The clowns didn’t show. And oddly, I couldn’t find three of my signs, they disappeared. I take great pride in my yard signs and was distraught.

Walkers started to arrive, but hung out in the parking lot and I noticed the crowd was thinner than it had typically been at that time in years past. Standing in the rain for 2 hours must have taken its toll because I snapped. I couldn’t fake the positivity. I lost it. I walked to the Boathouse restroom to let out a little cry.

Right before disappearing into the building, I looked at the sky and said, “God, I think you’re showing me a sign. I can’t handle this stress. I’m done. I quit. I don’t want to do this anymore.”

After a moment of composing myself, I emerged. I hoped that the sky would be sunny and God would show his faithfulness. Instead, the wind whipped a little more, the raffle table was drenched, and the sky remained a depressing gray.

And the rain. Kept. Coming.

Then the DJ turned on the music. First song: Blame it on the Rain. I laughed. I spun around to take in the whole scene. The place was filling up. The parking lot was packed. Walkers were erecting their own tents and kids were splashing in puddles and waving heart balloons. The Steelers’ mascot, Steely McBeam, was dancing with a grandma. I felt my positive self emerge and I let myself relax.

The rain stopped temporarily so we could deliver our speeches and do the CHD angel tribute. My daughter and another sweet CHD survivor led the countdown. Then we walked. We walked a mile through the scenic park with our umbrellas held high and strollers covered. Everyone smiled.

I ran ahead and off the path to snap pictures of the crowd wrapping around the lake.

People. Kept. Coming.

Lots of people.

No one cared that the clowns didn’t show, or that their socks were wet or the bouncy house remained flat. They were on a mission to fight heart defects and represent their heart warriors. We’d faced worse storms.

Then I looked across the street through the crowd and standing proudly were my missing signs. A volunteer accidently put them in the wrong place and I laughed again.

God will give us everything we need at the right time and not a moment sooner.

I walked back to the registration tent and our leader from headquarters said that by her rough estimate, we were at $99,000! I knew that meant we would well surpass our goal of $100,000. (We ended up over $101,000)

And, the rain stopped.

The local news station came and interviewed me for a story. Our cause would get more exposure.

By worrying, by fretting, by cursing out the skies, the only thing I did was waste a few moments where I could’ve been dancing or talking with my friends and family. It did nothing to change the outcome.

So, I was supposed to learn a lesson. He would always be faithful to me, and to our cause, I just needed to work on my faithfulness to Him.

I needed to focus on the 500 things that went right, instead of the 5 things that went wrong. Focus on the 30 signs that were in the right place and not the 3 that were in the wrong place.

So, I un-quit. And, started planning again for next year. This time, I’ll remember to dance when I can.

And to enjoy the rain.

Walking through a Storm: Heart Warriors Unite!

walkI’ve checked Sunday’s forecast in Pittsburgh so much I may have broken the Accuweather website. This week I’ve monitored the chance-of-rain percentage more often than I’ve fed my children and cursed at the icons that turned from tiny suns into black clouds.

As the co-chair for the fourth year of Pittsburgh’s Congenital Heart Walk, I’m anxious as we are just days away from walking for congenital heart defects to benefit the Children’s Heart Foundation and the Adult Congenital Heart Association. All the details are falling into place and the fundraising dollars are pouring in as the number of registered walkers climbs. All signs point to a successful event yet that one thing remains out of my control.

The weather.

Mother Nature has been wreaking havoc with storms and wacky bursts of torrential rain. Suffocating humidity and dangerous lightning are daily events. And her moodiness may continue on Sunday.

I grew sad thinking of nasty weather ruining the fun for the families gathering to celebrate their heart warriors. But then I realized something.

We’ve already survived the worst of storms. We’ve witnessed dark clouds, heard thunder roar and dashed through lightning strikes more vicious than what Mother Nature could deliver. We’ve waded through flood waters. We’ve experienced days we thought we’d suffocate and drown.

We’ve all faced a congenital heart defect.

We’ve handed children off to heart surgeons. Been unsure of the future. Planned a child’s funeral. CHD survivors wait on heart transplant lists or anticipate their next open heart surgery or pacemaker replacement. What could Mother Nature hand out that we haven’t already seen?

Not. One. Thing.

On Sunday, we’ll revel in the hope of a future without CHD. We’ll celebrate the survivors and remember the angels while children in twisted balloon hats blow bubbles and dance to upbeat music. We’ll laugh with soggy shoes and limp hair under ponchos covering our team t-shirts. We’ll walk together through any storm. Because that’s what we do.

And maybe God’s hand will push the clouds to the side over North Park and the sun will blanket us with comforting warmth. Our CHD angels will smile down on us. And just maybe we’re supposed to endure a quick storm so we can see a brilliant rainbow. Together.

So, bring it, Mother Nature! Give us all you’ve got. You can’t stop us. We’re the heart community.

www.congenitalheartwalk.org